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Special Events

At HNF, our members like to get involved!  There is something for everyone–from cocktail parties to bridge tournaments, brunch by the water to a rock and roll concert–we find the creativity and energy of our members to be limitless!  Every time we join together to raise awareness and generate funds for research into treatments for CMT, we are inspired, rejuvenated and motivated.  Please tell us what you have planned, how you are raising awareness in your home town and how we can help!


Fundraiser for CMT Awareness a Huge Success

On the afternoon of June 3, 2012 the small town of Wolcott, CT had an opportunity to show its support for a local family. About 200 adults gathered at the American Legion Hall for a wine tasting fundraiser in honor of the Hughes family, specifically their daughter Erin. Almost 10 now, Erin was diagnosed Charcot-Marie-Tooth (CMT) four years ago. Over those four years there have been numerous trips to Boston for treatment and surgery. “Monica and Dan Hughes are the most helpful, caring people” says neighbor and friend Tracey Rotella. “We knew the frequent travel had to be causing them financial hardship.” Tracey’s husband Al, a wine distributor, was determined to find a way to help. He and Tracey first mentioned the idea of a wine tasting fundraiser to their friend Staci. Staci is Dan’s sister. Over dinner in March Tracey and Dan asked the Hughes for permission to coordinate a fundraiser in Erin’s honor. Humbled by the offer the couple said they “didn’t want money but they did want a cure.” Finally, everyone agreed that a small amount would be set aside for future medical expenses and the rest donated for research. They had a plan. Al quickly found vendors willing to participate and donate a percentage of their proceeds. Beer and vodka were also available, because, as Tracey enjoyed revealing, “Al is not a wine drinker.” Appetizers and desserts were also available. After securing a liquor license required by the state and purchasing event insurance, they “emailed our families and all our friends” to tell them about it. They also went door to door and business to...

December 1-3, 2011 – Champions for Charity

For the the first time ever, the Hereditary Neuropathy Foundation will participate in Americana Manhasset and Wheatley Plaza’s Champions for Charity®. Champions for Charity® Holiday Shopping Benefit is December 1, 2 & 3, 2011. Help support HNF by doing your holiday shopping at participating Americana Manhasset and Wheatley Plaza stores during these three days, when 25% of your designated pre-tax purchases will be donated back to us!   You can also pre-shop in the name of HNF! Americana Manhasset’s Personal Shopping Service can accommodate customers who would like to shop on behalf of HNF but who will be out of town during the actual event. To pre-select items for Champions for Charity® call Danielle Merollo at 800.818.6767. Services also include complimentary gift-wrapping and business gifts!   How does it work? Simply register for a CHAMPION CARD which is the quick and efficient way to participate in Champions for Charity®.  Be sure todesignate 25% of your purchases to HNF! A Champion Card is not a charge card, a debit card, or a payment card of any kind.     Registration for your 2011 CHAMPION CARD will begin October 1, 2011. You may register online, by phone at 800.818.6767, or in person at Concierge Services located between Gap and Theory on the south side. You will receive your CHAMPION CARD by November 25, 2011. Upon registration, please choose Hereditary Neuropathy Foundation as your charity of choice.   When it is time to pay for your merchandise, give the sales associate your CHAMPION CARD and any method of payment. The associate will swipe your CHAMPION CARD, punch in the pre-tax amount of...

Podiatry Meeting in NYC

Tuesday, September 27th was a beautiful evening where the New York State Podiatric Medical Association joined the Hereditary Neuropathy Foundation in celebration of Charcot-Marie-Tooth Awareness Month.  The evening included a screening of the documentary film, Bernadette along with advice on treating CMT patients by Dr. Hal Ornstein of New Jersey Affiliate Foot and Ankle LLC.  Joined by NYSPMA President, Dr. John Jurcisin, over fifty individuals participated in this educational CMT awareness night.  Hosted by Dr. and Mrs. Robert Tornambe, the cocktail party was a smashing success. Dr. Ornstein led the discusion about the early signs of CMT, and importance of every day foot care especially on CMT patients.  CMT patients often suffer through years of misdiagnosis.  Most CMT patients first notice symptoms in their feet, so the National CMT Resource Center and Hereditary Neuropathy Foundation believe there’s no better place to start their awareness...
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